Hello to every one of my regular followers and new readers! So sorry it has been so long since I updated my postings, a lot happening lately – most of which has been good. I did recently have a biliary stent replacement and developed acute pancreatitis as a result of it, so spent last couple of days in the hospital. Bummer way to spend New Years’ Eve I tell you!

I just wanted to touch base and say I am working on a new article on – what else – biliary stenting and the complications that come with it. Need to finish some research before I am ready to post so keep an eye out, I will post soon.

I wish everyone a Happy and Healthy New Year in 2011. I have been awed by the tremendous outpouring of support from the blog community, patients and caregivers alike. It is very humbling and I am so glad my posts, articles and links have been a help to so many. Thank you!
Mark

Anniversaries can be bittersweet events. On one hand a wedding anniversary, for example, can be a celebration of undying love, patience and steadfast devotion that says “Hey we stuck it out, through good times and bad, through temptation and frustration but we persevered – and we made it work. Here’s to us!”

On the other hand, the anniversary of a loss – whether it be of a loved one, a beloved pet, a career – can be a time when a nearly healed scab gets ripped off to reveal raw, painful emotions which were thought to be finally under control.

I am celebrating an anniversary of sorts myself today: I have been on some form of chemotherapy for my cancer for one year now. 365 days. I have mixed emotions about this, but when I weigh it all out, I conclude that I am truly grateful to be able to celebrate this particular anniversary.

It was a little over 12 months ago when I was diagnosed with a challenging cancer; I was actually unsure at diagnosis if I would be around to celebrate another birthday. Thankfully, I passed that milestone this last week too, and in pretty good shape, all things considered. For this I am extremely grateful.

When I reflect back on this past year, I can’t help but observe a few things about my cancer journey that I feel I should share with others in a similar situation, especially those just recently diagnosed. Maybe someone without cancer can benefit from these pearls as well.

Don’t Sweat the Small Stuff. Really. I know it may sound like a cliché, but I speak with some authority here. Most of the stuff we worry about on a daily basis never materialize. Most problems that we anticipate have a way of sorting themselves out before they ever present themselves to us. Worrying about a bunch of stuff that you can’t control only serves to stress you out and shorten your life – stress hormones are a bitch on your body.

If you don’t already, you’d better learn to appreciate and respect your family. They are the ones that will be with you through the miserable times, the chemo, the radiation and for some, the humiliation of having someone take care of basic hygiene for you when you’re physically unable to yourself. Believe me, not many of your work buddies will volunteer to come over and flush your PICC line for you (or worse). I have seen it first hand in my own family and experienced it myself; Parents, kids, siblings, aunts, uncles and cousins literally coming out of the woodwork and stepping up to the plate to assist. It may not be in the way you always need, but they’re trying and doing what they can. They’re there for you. They have a sense of commitment that most others can’t fathom.

Along those lines, a cancer diagnosis has a way of revealing who your true friends are. Close friends who you thought would be there for you and thought actually gave a crap mysteriously become unavailable, stop calling or emailing, Perhaps they can’t deal with it, perhaps they don’t know what to do, or say – I am not sure the reason. On the other hand, friends and co-workers who I would have considered mere acquaintances suddenly extend themselves in ways you couldn’t have anticipated and really come through. Close friends become closer and consistently show love and altruism beyond comprehension It is truly amazing.

Stop to appreciate the simple wonders around you. As westerners in the dawn of the 21st century, many of us seem to have our priorities all screwed up. We race around like crazies, trying to multi-task during every waking hour of the day (and sometimes when we’re not awake), feeling very industrious yet not really moving forward. My suggestion is to take some time to appreciate the beauty and wonder of nature around us (even in a crowded metropolis, a city park can be a wonderful sanctuary). Technology has certainly made our lives easier in some respects (ease, speed and access to unfettered communication), but it has also isolated us from each other. If you’re so pre-occupied with being entertained 24 hours a day that you must wear i-pod headphones everywhere you go, you’re really missing out on a lot of potential fascinating interaction with others. Texting is not a high form of interpersonal communication. Turn the technology off for a few hours each day and enjoy the wonders around you – you may learn something in the process.

Hopefully a cancer diagnosis will not have to be the impetus to do something meaningful for others. Volunteer, help a neighbor, reach out to a recent grad and give them some advice, see how you can assist someone less fortunate. I’ve found that by changing my focus on others it has allowed me to tolerate my cancer and the various adverse events that come with both the disease and the treatment much better. Not an easy thing to do when you tossing your cookies after chemo, but at the very least, it takes your mind off of your own problems and helps to put things in perspective, especially when you’re helping others who have it much worse. Believe me, there is always someone who has it worse.

Finally, try hard not to let your diagnosis control your life. Easier said then done at times, but trust me when I say if you let your cancer control you and what you do, then you’ve already lost the battle. You have to fight like hell to beat your cancer. Be your own advocate, research treatments, push your medical team, make up your mind to control the disease, don’t let it control you. I know it must be tempting to use a cancer diagnosis as an excuse not to do things, to give up, to submit. If you do, you’ve begun to let the disease control you, instead of controlling the disease.

Well that’s my sermon for today! Ha Ha. Some of my regular followers probably wonder what’s gotten into me, since most of my posts tend to be resource or issue oriented advocacy posts, and not your typical blog fare. I promise to be more diligent in posting research and resources in the near future; I’ve been busy living. In the meantime, Happy Anniversary to me. I’ve got a life to live.

I am very pleased to introduce my guest blogger today: Christi Disch is the Program Services Manager at MyLifeLine.org Cancer Foundation, based in Denver, CO.

How can I help? How are you feeling? How long is treatment? Can I bring a meal? What do you need? The questions are endless when you are first diagnosed with cancer.

MyLifeLine.org provides a tool for cancer patients and caregivers to streamline their communication during and beyond the cancer journey so they don’t have to answer the same questions over and over again. Our mission is to empower patients to build an online support community of family and friends to foster connection, inspiration, and healing.

Our free, customizable websites include the following features and more…

Patients can easily build their online support community to share information on their terms via one central website.

By updating friends once, the patients reserve more energy for healing. See the Connecting Updates page.

Family and friends appreciate getting the latest information without being intrusive.

Patients aid their own healing process by expressing what they are feeling and experiencing.

Patients can keep in touch with pictures of their cancer experiences or fun photos of family and friends.

Patients can educate their support network on the type of cancer they have and the treatment process, through the learning links

Research has shown that strong support networks can improve access to health care (Abstract on formal and informal support networks and National Cancer Institute on communication throughout cancer treatment). Our websites help streamline that communication and also make it easy to ask for help.

Millions of unemployed Americans rely on their COBRA health care coverage. COBRA coverage, however, typically only lasts for 18 months after you leave an employer. Cancer treatment, like that for many chronic diseases, knows no time limit and can often take years of chemotherapy and/or radiation before a patient is cured. This puts cancer patients who are in treatment and currently relying on COBRA in a particular bind.

Well, there is hope on the horizon. Last week, U.S. Representatives Susan A. Davis (D-San Diego), Robert Andrews (D-NJ) and Joe Courtney (D-CT) introduced legislation to allow those people currently on COBRA to hold on to their health care coverage longer.

The COBRA Health Benefits Extension Act (H.R. 5324) allows those currently enrolled in COBRA to purchase their insurance beyond the standard eligibility period, generally 18 months, until they either find another job offering coverage or become eligible for the an insurance exchange to be created by the new health reform law.

“The extension of coverage will give those currently on COBRA peace of mind that they will have health security,” said Davis. “Losing a job that has health insurance coverage while treating an illness at the same time is a frightening prospect for so many people and their families. We need to give people a bridge between coverage.”

“The health care reform bill that became law in March was the first step to providing all Americans access to affordable health insurance, but those struggling without a job simply cannot afford to wait for some provisions to take effect,” said Congressman Andrews. “This legislation ensures that recently unemployed Americans will not lose their health benefits before the new insurance exchanges are up and running. Rather COBRA enrollees can rest a bit easier knowing that the health and wellbeing of their families will not be jeopardized while the changes to our health care system gradually take effect.”

“Weathering unemployment is difficult enough without also having to worry about health care costs or how to pay for a catastrophic injury,” Courtney said. “With long-term health care fixes on the way, it is important to provide a bridge to fuller benefits, and extending COBRA coverage will do just that for many Americans. Erasing the worry of expiring benefits will lift a significant weight from overburdened men and women who can now focus on their futures and their families.”

Davis, Andrews and Courtney all serve on the House Education and Labor Committee, which has jurisdiction over H.R. 5324.

COBRA coverage can be extremely valuable to those facing a serious health problem or chronic condition. The average cost of treating breast cancer rose to nearly $21,000 and prostate cancer to over $41,000 in 2008, according to the National Cancer Institute. The costs for treating cholangiocarcinoma are even higher in my personal experience: Every trip to the chemo suite carries with it an insurance billing of approximately $9,000 – $14,000 (depending on drugs used), and that is with plan discounts. This is a 3 time-a-month occurence for me now. That of course does not include CT scans, lab work or physician consults. Out of pocket costs for cholangiocarcinoma patients can easily top $10,000 – $15,000/year even with COBRA insurance coverage.

Here’s how you can act to show your support of this important legislation: Contact your U.S. Congressperson and two U.S. Senators and let them know that as a voting constituent, you support this important piece of legislation and expect them to support it as well. It doesn’t carry any cost to the taxpayer as the costs of the premiums are paid by the insured who have elected COBRA coverage with a small fee paid by employers. Here is a link to a site that will help you to identify your U.S. Congressional Representatives and U.S. Senators if you’re unsure who they are: http://www.usa.gov/Contact/Elected.shtml

Here is sample verbiage that you can use in a letter or email to your Congressional Representatives and Senators:

Dear Representative/Senator_____:

I am writing you to ask your support of an important piece of legislation that will offer protection to millions of unemployed Americans. The COBRA Health Benefits Extension Act (H.R. 5324) allows those currently enrolled in COBRA to purchase their insurance beyond the standard eligibility period, until they either find another job offering coverage or become eligible for the an insurance exchange to be created by the new health reform law.

This bill would not create a burden on taxpayers as the costs would be born by the insured. It would offer a safety net for those unemployed or self-employed and their families currently relying on COBRA benefits.

I was very fortunate to attend the 101st Annual meeting of the American Association for Cancer Research in Washington, D.C. last week.

There were lots of promising compounds beginning pre-clinical testing by several companies that may someday have an application in treating bile duct cancers. Unfortunately, there were not many presentations on current clinical research with Cholangiocarcinoma. One poster presentation by a group of researchers in Japan showed evidence that a particular type of liver cell called a Hepatic Stellate cell, which has been known to cause fibrosis in chronic liver conditions, may play a key role in the formation of cholangiocarcinomas, and thus may direct future therapy development. I have summarized the study below.

In the meantime, I am looking forward to attending the CanLiv Hepatobiliary conference in May and ASCO in June, where there are numerous clinical trails that will be discussed. More on those later.

Summary: The study was designed to identify if hepatic stellate (HS) cells, which have previously been shown to have as pivotal role in fibrogenesis (defn: Formation of fibrous scar tissue) in the liver, exist in the cancer stroma and architecture of intrahepatic cholangiocarcinoma (CCA) cells and what the interaction of these cells are in vitro (in the laboratory) and in vivo (in a living organism). HS cells are found in the sinuses between liver parenchymal spaces and exist in normal liver tissue in a quiescent state and only become activated when there is damage to the liver, as in cirrhosis or fibrosis. It is thought that HS cells play a pivotal role in storing vitamin A when quiescent, but then release collagen scar tissue when they are activated in periods of disease. The authors examined proteins secreted by the co-culture of HS cells and CCA cells in culture medium and in mice in multiple combinations.

This results of this study indicated that HS cells have an important role in accelerating cholangiocarcinoma growth progression. Several proteins including Interleukin1 (IL1β), which is a potent proinflammatory cytokine,induced by co-culture model may be therapeutic targets for chemotherapy which focus tumor-stromal interaction in cholangiocarcinoma.

Hello and my apologies for the long week+ without any posts…The topic for this week is Support Groups.

Most hospitals – even local and regional medical centers which are not affiliated with teaching centers – have at least one or two cancer support groups. These are for the more prevalent cancers like lung, breast, colon or prostate. Few hospitals have support groups for liver cancers and fewer still for cholangiocarcinoma. So what is a cholangiocarcinoma patient or family member to do?

Well, there are several options. First, you can try to join a general Cancer group if one exists. If it is a larger Regional Hospital, they may have a GI Cancer or Liver Cancer Group for all types of liver CA (Hepatocellular Cancer, Cholangio, etc.) or a PanCan group for Pancreatic Cancer; While not the same, many of the chemotherapy regimens and surgical techniques used in treating Pancreatic Cancer are similar to those employed in treating cholangiocarcinoma, so there are some similarities there.

An alternative option is to form your own Support Group. This may sound like a daunting task but it is really do-able and just takes some leg-work on your part. Let me address a few FAQs to start with:

What exactly is a Support Group? A Support Group is a small gathering of patients and caregivers who share common experience with this disease; People who truly understand what you’re going through and can relate. Read more…

The Cholangiocarcinoma Foundation is generously sponsoring a free Webinar this Tuesday, March 23, 2010 at 11:30am – 12:30 pm EDT.

As part of our ongoing Spotlight on Clinical Trials series, The Cholangiocarcinoma Foundation invites you to join them for the upcoming web-based seminar featuring the active cholangiocarcinoma clinical trial entitled, “Capecitabine, Gemcitabine, and Radiation Therapy in Treating Patients With Cholangiocarcinoma of the Gallbladder or Bile Duct.” Principal Investigator Dr. Edgar Ben-Josef of the University of Michigan will lead the discussion of this clinical trial. A question and answer session will follow Dr. Ben-Josef’s remarks.

This clinical trial was developed by the Southwest Oncology Group, and is a multi-center phase II clinical trial studying how well giving capecitabine together with gemcitabine followed by capecitabine and radiation therapy works in treating patients with cancer of the gallbladder or bile duct. In this trial, participants receive oral capecitabine every 12 hours on days 1-14, and gemcitabine hydrochloride IV over 30 minutes on days 1 and 8. Treatment repeats every 21 days for 4 courses in the absence of disease progression or unacceptable toxicity. After the 12 week cycle concludes, participants begin receiving oral capecitabine every 12 hours on days 1-7, and undergo concurrent three-dimensional or intensity-modulated radiotherapy on days 1-5. Treatment repeats weekly for 5-6 weeks in the absence of disease progression or unacceptable toxicity.

All you need is an internet connection to join this Web-based seminar. Once registered, you will receive an email with a link specific to you and instructions on how to join the Webinar on Tuesday.

Important Disclaimer

This Blog is generated by a current cholangiocarcinoma patient and is intended as a resource for other cholangiocarcinoma patients, their families and caregivers.
Please note: I am not a healthcare provider. Nothing on this Blog qualifies as certified medical advice. Information on this Blog including links to other sites is provided free and is for informational purposes only. Any opinion stated on this Blog is solely that of the author and does not represent the opinion of WorldPress.com or any other institution referred to in the Blog.